Demonstrating trustworthiness when collecting and sharing genomic data: public views across 22 countries

Area of Science:

• Genomics
• Bioethics
• Public Health

Background:

• Public trust is crucial for genomic and health data collection and research sustainability.
• Demonstrating trustworthiness is essential for data collectors and sharers.
• The most effective measures for building public trust in genomic data sharing remain unclear.

Purpose of the Study:

• To analyze public perspectives on genomic data sharing.
• To identify measures that enhance public trust in the use of donated DNA and medical information.
• To examine cross-country variations in perceived trustworthiness measures.

Main Methods:

• Analysis of the 'Your DNA, Your Say' online survey data.
• Inclusion of responses from 36,268 individuals across 22 countries.
• Examination of perceived value of trustworthiness measures and between-country variations.

Main Results:

• Transparency about data access benefits was the top trust-building measure for over 50% of participants in 20 countries.
• Key trust factors include data withdrawal options and transparency on data usage.
• Significant cross-country variations exist in the perceived importance of specific trust measures.

Conclusions:

• Transparency regarding data use, goals, and benefits is paramount for public trust in genomic data sharing.
• Publics value understanding the benefits derived from their donated data.
• Locally tailored approaches are important for fostering trust in global genomic data sharing initiatives.